happy being trevy

April 3rd was his 11th birthday. As I was tucking him into bed, I told him that I love watching him grow up but I also wish he could stay my little boy. He smiled sweetly, and threw me this bone of comfort,  "Well, some day you will meet me in the sky... when I won't be sick anymore." 

The sunlight. The sweet face. The concentration oozing from his pores. The joy I could see brewing in his soul at a job well done. All these ingredients swirled together to fill my heart with an "I love homeschooling" moment this afternoon. Which was much needed after the birthday angst he gave me this morning. The beast! He didn't even wait until I'd finished my coffee before he began with the whining and emmy worthy tears over wanting his birthday present TODAY. For a minute there I wasn't sure we were going to survive. But he rallied and I captured proof that requiring patience will not actually kill him. Though I'm pretty sure I noticed a few more gray hairs winking at me as I passed the mirror. Now to make it through until Sunday. We're planning to surprise him with an April Fool's birthday rather than making him wait until the 3rd.

The past month has been a bit of a blur as Trevor participated in a brain stimulation (tDCS) study out of Boston Children's Hospital that had us in the city for most of three weeks. The good news is that we're continuing to see seizure improvement from the treatment. The bad news is that because this was a study the technology is not yet ready for ongoing use. So now we wait and hope that the team can get this to us within the next few months.  In the meantime, we are trying to celebrate the reduced seizure days while we have them and transition back into our normal routines. I don't know about your home, but in ours transitions are never easy. Especially transitions that involve perceived work. Yesterday was rocky indeed, but happily today was wonderful!  Trevy asked if he could choose the order of our schedule and write his list on the whiteboard. How could I say no to that?! And just look at all those good things happening!  Criti...

Ominous.  The only word I've found to come close to describing how it feels when we know a seizure is brewing. Ominous hangs in the air when he incessantly yawns and expresses fatigue. We have learned that these are looming seizure markers. Ominous follows us up and down the stairs while I'm always making sure, often to his chagrin, to put my body between his and falling. Ominous has us jumpy because he's hungry and it would be inhumane to tell him no eating until the seizure passes, seeing as we don't know exactly when it will come. It could be in a minute or it could be in an hour. All we know is that it's ominously looming. Ominous sits beside me while I watch him play the Wii in the early morning hours because it's an easy way to keep him contained when he's restless; when his body can't relax because he too is subconsciously aware of the ominous in the room. The seizure finally came while he was laying in bed watching Kids' Yo...

Cleaning is my stress relief of choice. Which is why it's been a purge-palooza here lately. Yesterday, while clearing out an ancient filing cabinet in the basement, I stumbled on an old journal... 

He's always exhausted after his longer complex partials. An irony is how the tonics look so much more violent on the surface. Sometimes they hit with such force that he, literally, is spun around in a circle. Yet, for some reason, perhaps it's because they self resolve in less than a minute, he's able to carry on with just a yawn or two. He even told me the other night that he'd had a good day because his seizures didn't make him tired. He had over five tonics that day, but no complex partials. Yesterday morning a three minute complex partial left him down for the count for hours. It was the first time he actually fell asleep during the recovery. In a sweetly heart breaking way, his four legged best friend curled up on him while he sleep off the fatigue. I often consider how thankful I am that we can home school him. I'm not sure my heart could endure knowing he felt like this away from home and those who love him most. Later...

The following poem was written by Trevy's big brother who has lived all the hard and hopeful moments beside us. This year has been especially hard. He says his inspiration is knowing our hearts are broken but watching us continue to push forward which has shown him what true love looks like.    Ones Who Cry in Tears of Iron  If the extent of love were passing smiles Nothing would there be to gain. This love tells me of a different tale, One covered in darkness and pain.  Transcending far deeper than smiling words  Could ever care to truly explain.  In times of joy and times of peace,  The bond we share is plain.  Yet I know it's those times of hurt Showing love has no refrain.  For ones who cry in tears of iron, Only they, know my true name.  -- Toby Foltz